Categories
Spotlight

Truth Beacon – Experiences

The scientific literature is accurate, as far it goes. Multiple sclerosis results in progressive disability (there are scales for measuring this) or loss of function (you don’t need scales for this). But science is empirical, confined to the observable sphere. Science doesn’t know what anything feels like, the nature of anything. […]

Out of context, Paraic O’Donnell

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disability is a complex identity {if it even is (considered as) one}, and disabled people are multifaceted non-monolithic human beings

Partial quote, Wendy Lu

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The moment you forget that you can make mistakes, you are able to do great harm to the people you base your ego on understanding. […]

Viewing yourself as Good With an entire category of people opens you up to massively egotistical mistakes that lead you down the road to outright physical and emotional abuse.

The best way to approach learning about cats is with a combination of respect and humility. Know that you’re going to mess up, but don’t focus on it so hard that you don’t even try. […]

Out of context, Mel Baggs

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Some of the better research I’ve been part of has given me space somewhere to share what I think and feel or how my experiences do or don’t fit. It also follows up in some way with the conclusions. There’s a relationship, a sense of reciprocity at least in the process even if we don’t agree at all about anything else. It doesn’t have to be participatory to be collaborative in that sense. Nor does participatory research bypass issues of exploitation or harm in and of itself. The nature of community is the diversity of perspectives and voice – it is rare to be able to accomodate each of them.

The other kinds of research (and I include interview here) feel exploitative. My experiences are collected as evidence of ideas I don’t agree with and contorted to fit arguments that don’t include me. Or they are simply inept, using my time to educate themselves on matters they haven’t bothered to read about.

Sarah K Reece

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It’s perfectly okay to cherry pick ideas and strategies from different – even conflicting – frameworks to create something individual and effective for yourself/selves.

The Dissociative Initiative

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[…] assume they are a person, and remember what you don’t know.

Julia Bascom

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In the same series:

Categories
Spotlight

Truth Beacon – Research & Authority

[N]o matter what you do in the disability community, you will ruffle feathers just because it’s such a huge community, and it’s heterogeneous. It’s full of very different opinions and backgrounds because disability affects everyone and anyone in any culture. So there’s gonna be, of course, dissent and disagreement.

Caitlin Wood

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[O]ne of the biggest dangers that the culture of the autistic community faces is the allure of a single story told from within.

chavisory

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To be an autistic in a minority culture is to realise that we are not all standing on the same ground when it comes to our experiences as autistics.

Dream Walden

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But autism researchers are not geologists, to paraphrase @aneeman. We’re not rocks. We talk back. If autism researchers don’t want to work with people, they should study something else.

Sara Luterman

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Both [the personal experience and the scientific literature] provide insights. But these insights are qualitatively different, and no universal standard sets one above the other.

William Mandy

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The four kingdoms [Illness, Identity, Injury, Insight] may not capture the entire universe of the autism spectrum, but they describe largely non-overlapping perspectives that now divide the world of autism.

Thomas Insel

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No one autism story takes every single perspective into account. […]

Many of the perspectives conflict […] and there are just so many that it’s nearly impossible to remember to include them all.

Stuart Duncan

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[T]here are, I think, many versions of disability pride

Susan Wendell

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We don’t all agree. You don’t have to agree with all of us. You can’t possibly agree with all of us anyway. A lot of times people embroiled in identity politics get really wrapped up in the idea that the oppressed person is always right about their oppression. That’s bullshit. We can be as wrong as anyone.

However, we have on average thought more deeply and for longer about our oppression than other people have, so you can benefit from our experience when dealing with the way your own oppression takes the same shape as ours.

You can learn a lot more about ableism by looking into what disabled people have already figured out about it

Mel Baggs

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…the erroneous presupposition that observation of human performance is an exact science, that performance is evidence of ability, or simply is ability.

Idea and keywords by C.F. Goodey

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[A]utism research […] a mix of insights and insults.

PredictionError

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In non-autism areas, poor quality research and its harms – its waste of resources, its misleading findings – are vigorously condemned. There is recognition that even the best existing research standards are flawed and need always to be improved.

But when it comes to autism, standards have instead been lowered or discarded to accommodate the extremely poor autism intervention literature.

Poor standards in intervention research are seen not as harmful and wasteful, which they are, but as what autistics need and deserve. Resources have poured not into improving these abysmal standards, but into making the very poor quality autism intervention literature more powerful and influential.

Michelle Dawson

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In the same series:

Categories
Spectrum

Lines – Glass (Part 2)

There are two definitions for inertia: 1) indisposition to motion, exertion, or change (“I don’t like or fear change.”) and 2) a property of matter by which it remains at rest or in uniform motion in the same straight line unless acted upon by some external force.

Generally speaking, people tend to be inert.  We develop habits, and we stick to them.  It doesn’t matter if the habits are good or bad.  We like predictability (“I like my car and would like to keep it.”).  We don’t want to be confronted on how we do things, what we think, or how we interact with others.  If it’s always been done a certain way, then most people will continue in this customary fashion from the smallest habit to the grandest cultural traditions.  In terms of inertia, this is called uniform motion.  For the most part, we like to remain in a state of uniform motion and/or rest, and this is not necessarily bad.  Society needs structure and uniformity to function from the nuclear family all the way to level of government.

In terms of health, this is called homeostasis.  The human body requires a certain amount of sleep.  We require vital nutrients, daylight, human interaction, physical touch, exercise, and clean air and water in order to maintain homeostasis.  All of this is part of uniform motion.  When an outside force acts upon this homeostatic inertia, that usually means a stressor has occurred like a virus, toxin, physical injury, genetic mutation, car accident, or the like, and homeostasis has been disrupted.  We are no longer inert.

MJ

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4.  When you regulate your daily actions, you deactivate your ‘fight or flight’ instincts because you’re no longer confronting the unknown.

This is why people have such a difficult time with change, and why people who are constant in their habits experience so much joy: simply, their fear instincts are turned off long enough for them to actually enjoy something.

5.  As children, routine gives us a feeling of safety. As adults, it gives us a feeling of purpose.

Interestingly enough, those two feelings are more similar than you’d think (at least, their origin is the same). It’s the same thing as the fear of the unknown: as children, we don’t know which way is left, let alone why we’re alive or whether or not a particular activity we’ve never done before is going to be scary or harmful. When we’re adults engaging with routineness, we can comfort ourselves with the simple idea of “I know how to do this, I’ve done it before.”

Brianna Wiest

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[T]here is something very different about how autistics react to novel and familiar things.  There is something very different about their preference for, and reliance on, repetition and routines.  But it’s not that they’re rigid while everyone else is flexible.  Neurotypicals are so inflexible that they insist on their social rituals even when it would jeopardize others’ safety.

Neurotypicals misunderstand other people, and inadvertently treat each other badly all the time – often in more damaging ways than autistics do.  Neurotypicals can be more rigid than any autistic about the rituals that matter to them.

The difference is that autistics and neurotypicals misunderstand other people in different ways and are inflexible about different things.

Because autistics are in the minority and sometimes lack the ability to explain or advocate for themselves, their way of misunderstanding and being rigid has been pathologized, while neurotypicals’ has been ignored.

Emily Morson

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[…] can we talk a little bit more about how much of autism therapy is about the therapist being rigid and controlling?

Alyssa Hillary

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Autistic people don’t all have a convenient love of tedious tasks everyone else hates. Some of us have the audacity to want jobs others want.

Ruti Regan

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(Under ‘Leadership/Management’)

How many times have you heard that you need to get the big picture? Or that you feel like you didn’t have the big picture? I’ve heard this phrase repeated too many times to count and each time I do the thought that runs through my mind is this: what exactly is the big picture and how can I get big picture thinking?

The fact is that the big picture depends on your point of view. I don’t believe anyone can truly have the big picture (serious emphasis on ‘big’) because it’s not possible to see the infinite number of influence points involved. In fact, the bigger the project, program or issue the more difficult it is for anyone – even the leader at the top – to have the big picture.

Christian Knutson

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They are fully aware of their entire environment. We are talking about a multifocalized attention.

Whilst the attention of a neurotypical individual only focuses on one point at a time.

People with this multifocalized attention are hypersensitive and perceptual. Thus, they have the ability to perceive the overall picture of a situation including all of the details, even those that usually go unnoticed for the majority of people. Therefore, it is extremely difficult for them to perceive only one thing at a time and to concentrate on it, if there is no relevant interest in doing so. […] These people perceive the global nature of their environment in a very complex way. They are sensitive to ambient noise, light, people’s movements, etc. They see and feel everything, constantly.

Out of context, Mélanie Ouimet

(translated by Tanya Izquierdo Prindle)

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Consider which two of these objects go together: a panda, a monkey and a banana.  Respondents from Western countries routinely select the monkey and the panda, because both objects are animals. This is indicative of an analytic thinking style, in which objects are largely perceived independently from their context.

In contrast, participants from Eastern countries will often select the monkey and the banana, because these objects belong in the same environment and share a relationship (monkeys eat bananas). This is a holistic thinking style, in which object and context are perceived to be interrelated.

Nicolas Geeraert

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There is a set of powerful visual learning tools used in schools, universities and workplaces all over the world that can help us better organize our ideas. […] thinking maps are a rich resource when it comes to creative analytical thinking processes. They help us visualize even the most complex ideas and make them tangible.

Orana Velarde

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I’d like to ask if we’re really more vulnerable to everyday emotional and physiological challenges or if we’re tired because we’re dealing with more of them. While I ask, I’d like to see how many neurotypical people can function while walking on an untreated broken foot. I’d also like to ask how many neurotypical people who unexpectedly found themselves unable to speak 10 minutes before they were scheduled to present at a conference would still present. Not more vulnerable than y’all, just dealing with more nonsense.

I think saying we are unusually poorly equipped to deal with certain challenges (lower threshold) and have fewer innate coping strategies is a simplification at best and wrong in places. We wind up getting into trouble more, that’s definitely true, but how would you cope in an environment designed for how I work? It’s often about mismatches.

Also, we have plenty of coping strategies. Noping out of bad environments (avoiding them) is an effective strategy when we’re allowed to use it, but it often gets called eloping because for some reason y’all want us there anyways. Covering our ears is a semi-effective way to deal with loud. Those things that get taken as signs that we’re getting dysregulated […] are often actually ways that we stay regulated, and that realization could (but only partially did) lead to the conclusion that we’re not so much short on coping methods as disallowed from using them.

Alyssa Hillary

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[P]lenty of people make choices that others would find terribly limiting – not teaching their children multiple language, not having children at all, working in a career that is emotionally rewarding but not financially so, or the reverse, codes of dress or diet restrictions imposed by religious belief. What right, then, do we have to criticize someone’s preference for the comfort of repetitive activities?

Restless Hands

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Some people might be better at certain things, we even call some of those people ‘geniuses’. But their ‘intelligence’ is the product of a concept of the time and place they live in. It is possible that, in another time, in another place, their ‘intelligence’ would not be ‘superior’.

Amy Sequenzia

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Categories
Positions

Acceptance

Major concept: Neurodiversity

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Kindness without respect is worthless

Erin Human

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Just like you shouldn’t force people to be proud of their autism, you shouldn’t force people to be ashamed of it either.

2Pacula_Was_Taken

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Now if we could only get the rest of the world to calm down and not stereotype [my son], we might get some serious quality of life improvements and more stress-free community inclusion going forward.

Mrs. Kerima Çevik

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Acceptance is not
giving up […]
doing nothing […]
what happens after you’ve fixed someone to your liking
[or] throwing away all rules, manners, education, skills and coping strategies.

Cynthia Kim

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Neurodiversity isn’t about pretending that autism, other developmental disabilities and psychiatric disabilities are all sunshine and rainbows. It’s about believing that we should be able to live our lives on our own terms and that our community should continue to exist, and doing whatever we can to make sure that happens.

Shain M. Neumeier

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Most parents are scared, insecure, unsupported and exhausted. […]

As autistic adults, we say that we are the real experts on autism by virtue of our lived experience. By the same logic, you can’t claim to be an expert on parenting if you’re not a parent. […]

Parents, in turn, don’t always listen to autistic adults as much as they should and thereby miss out on some very valuable insights.

Maura Campbell

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Growing up autistic in a world made for non-autistic minds is difficult. Then again, so is growing up lefty in a world made for righties.

It’s not better or worse – just different. Families with lefties, women, people of color, LGBQT, and kids with disabilities love each other exactly as they are and wouldn’t trade them for a child who has an easier path ahead. Raising a child on the autism spectrum has its challenges, but so does raising any child. All of us will have our obstacles.

Ashia Ray

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I come down, on the whole, firmly on the side of the self-advocates; I think it is critical to listen carefully to what any marginalized community says about their own experiences.

At the same time, I think they sometimes forget that many parents do not have the tools or the ability to build a fully autism-friendly life for their children, and that some compromises simply have to be made (as much as I hate them) at this point, in order for an autistic child to be integrated into our terribly narrow-minded society. […]

Restless Hands

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When parents like me talk about our kids with disabilities and intense support needs, we have to be thoughtful. We need to make it quite clear that our kids are much-loved and very awesome human beings. We should never, ever state or imply that any challenges we face as a parent are our children’s fault. We need to handle their privacy with delicacy. And we shouldn’t accidentally enable disrespect towards children who are already too-frequent magnets for morbid fascination, and pity.

But we do need to talk, because our parenting gig is not like other parenting gigs. It just isn’t. We, our kids, and our families need different supports than families whose kids don’t have disabilities, and we often need a lot of them. Sometimes we’re not always sure where to find those supports, or even aware of available supports; sometimes we’re ashamed to pursue the supports we and our kids need. And not having the supports we need for the best quality of life possible can lead to unnecessary hardship for everyone involved.

So, let’s talk about what parents like us need, and especially how to get what we need. But first, I need to be forthright on one matter: In no way does lack of services excuse harming our children. Ever. […]

Shannon Des Roches Rosa

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You are right; we cannot make your autistic loved one non-disabled. But we can help make a future that has room for people like your child in it, complete with the rights, the access, and the supports they need to live their fullest life. We think that that is doable. We think that that is right.

Yes, autistic lives are different. Yes, they are often hard. No, they will not look like the lives of non-disabled people.

We just don’t think that that makes disabled lives wrong.

Emily Paige Ballou 

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For seven years, we’ve been drowning. And since autism is synonymous with all things good, acceptable, and neurodiverse in this world, and since all kids with autism are simply wired differently, and since doctors who say otherwise are quacks, and since parents who think otherwise are in denial or worse, we’ve been forced to remain silent about our pain and our reality.

For seven years, the autism label slapped on my son’s medical condition has given doctors a reason to dismiss his suffering, friends a reason to be angered by our failure to show up at important events, and family members a reason to question our sanity and criticize our parenting skills.

My son’s autism label gave us a reason to just shut up. Even in our darkest moments, we reported our family was ‘fine, thanks.’ We trudged forward, shamed into silence. To say we did not accept our son’s assignment to autism as his destiny, that we were searching for a Get Out of Autism Jail Free card, would have been perceived in the same manner as if we were to say we did not love our son. That he was intrinsically bad, and wrong, and not what we had hoped for.

Ashlyn Washington

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